Meet Freya and her family

Freya was born a healthy seven and half pound baby, but, shortly after her birth, Emma and Dean, her mum and dad, knew there was something wrong.

This is Emma’s story

Freya was born breach and had ingested meconium so we knew there were going to be a few problems immediately. Doctors also suspected that she had cataracts, which affected her sight. Freya had a small head and her toenails were touching her shins and doctors later confirmed she had talipes, (otherwise known as clubfoot) which we were told could be rectified through therapy and plaster casts.

A week later, after we could take Freya home, the eye specialist confirmed that Freya had cataracts in both eyes and asked if we minded if a paediatrician could come in to look her over.

The paediatrician worked his way around Freya’s little body and by the time he got to her chest, I had already been told she had significant difficulties. It was just too much. I asked if we could stop and wait for my husband to arrive. Dean came 15 minutes later and the paediatrician went through the full check again, telling us that Freya could have neurological and developmental problems – but these needed to be confirmed.

The following week she was in plaster casts from her toes to her hips on both legs and still wasn’t feeding or sleeping. At first we didn’t know she was blind and deaf so she’d doze for 20 minute intervals and then she’d have like a panic reflex and her arms would go out making sure we were there. Freya didn’t pass her home hearing test at her two-week check-up, and at eight weeks, we were told she was deaf. I remember being given her hearing aids when she was two months old and sitting in our car just crying because our house was like a storage unit for all her machinery. It was hard and we knew it wasn’t going to get easier. Doctors also suspected that there’d be problems with her kidneys as she has high blood pressure and was at risk of having a stroke or heart attack if she gets dehydrated.

“This went on for a year – every time we saw a doctor, something else was picked up.”

Then, the unimaginable happened, my mum also ended up in hospital and passed away two months later, when Freya was just 16 weeks old.

It’s weird, Freya and Adam got us through that tough time because we didn’t get a chance to stop. You have hospital appointments; you just have life. I was helping my dad with his house and trying to keep smiles on our faces so it was more normal for Adam – that got us through.

“That first year is a blur but we just had to get on with it – there was no time for anything, the house was a mess, we were a mess.”

We had some support from deaf and blind charities but later that year, when she was diagnosed with Cockayne’s Syndrome (Type two), a fatal neurodegenerative disorder, even the doctors started pulling away. We definitely lost friends. Some people don’t know how to talk to you. Every week there was bad news.

“How many times can you phone up a friend to see if they’re okay knowing you can’t help?”

We definitely understood.

Once Freya was diagnosed, doctors gave her a prognosis of 10 months to three years and we’d already had a year and a half so it was really hard to talk to anyone while we adjusted to that news.

Hospital appointments got worse because Freya was always getting sick, I was stuffing her into a baby carrier or buggy trying to get her on the tube – her immune system was getting so weak and she picked up everything. It was then, someone mentioned Rainbow Trust Children’s Charity to us.

“I remember thinking I still didn’t need help. I thought I had to do everything.”

But, I eventually gave in. After speaking to Christina, the Surrey Care Team Manager, we were assigned Janet, a Family Support Worker. Janet said she’d come around to introduce herself to Adam and I and just sit with us for a little while and have a cup of coffee. She got on so well with Adam and took him straight to the park. He couldn’t stop talking about her.

Janet spends loads of time with Adam and we even do the odd day trip which is amazing because we can all go. We went to Legoland – Adam loved it. It’s just little things like that, meaning that we can leave Freya with someone we trust.

Even if I need someone to talk to, I can call or text her. She does some of the stuff that my mum would have done, like taking me to the hospital and phoning to make sure we are OK.

“I didn’t know how much we needed her until we had her support.”

I was juggling far too much, nothing ever got finished. Janet helps with appointments and she sits and listens to me. We have a laugh and a joke - which I don’t do enough. It’s just being able to do things that other people do.

With Freya, she can be fine when she wakes up but by nine, she could be seriously ill and I can be thinking, right we’ve got to get to A&E and what do I do with Adam? Janet is my third person to call – I call Dean, my dad or Janet.

We were so lucky to have Janet. She’s like family now. I can’t imagine her not being around. Even after Freya, she’ll still be part of our lives and will always be welcome in our home. She’s made life so much easier for us. I think she was made for us – she’s brilliant.